Back to the Heart of it All

By Jennifer Goubeaud, a member of the Czech Republic February 2018 team

I don’t feel inspired very often these days. After a decade in the field of ABA, sometimes I feel like I’ve seen it all. If I’m being honest – I’m burned out. Over the years I’ve tried working with different populations/diagnoses, across different settings, different age groups, and even took some time away from clinical life to work in research, in an attempt to find my career happy place again. When I stop and think about the common factor of my frustration, it leads back to money. I’ve worked in settings that didn’t have much of it, which leads to less than stellar services being provided (some clients had 5 hours a month of behavior services), and I’ve worked in settings that get incredibly generous funding, but allow profitable decisions to outweigh the most clinically appropriate decisions. Now, I’m not a businessperson in any way, shape, or form, so for me it’s difficult to sit back and watch profits trump care. When people are operating with money on their mind, and not out of passion, treatment integrity suffers. With that said, I signed up for a Global Autism Project trip with a need to try to find what made me love working in this field ten years ago. I found it, On Day 1 of walking into ABA Centrum in Prague. It didn’t take more than a few minutes to see the passion driving the amazing women working here. There are only four of them, all are mothers, and three of them have their own children with special needs. Not only do they come to work everyday to teach children with autism and provide support and training for the families, but they have also stood outside of City Hall with pictures of their children, pushing for lawmakers to allow insurance companies to pay for ABA. See, insurance in the Czech Republic does not cover ABA services for children on the spectrum – children only get about four hours a week of ABA services, because that’s all they can afford out of pocket. Some families are spending over half of their income on these services. The services themselves are also limited. There are no BCBAs in the Czech Republic and only a few RBTs (the RBT exam is not currently offered in Czech, creating a barrier for people who want to pursue this avenue). The general population here is not well versed on autism and isn’t very understanding of these kids and families. The same goes for ABA. Despite the numerous barriers, these four women persist. They have sought out trainings, workshops, the Global Autism Project, and work tirelessly to help as many families as they can. You see their drive and heart while watching them work with the kids – the connection they have with each child is remarkable. How far they have come with so few resources is incredible. Needless to say, I think we were all blown away by how well they are doing things. They asked if we could put together a training for them on some of the things we thought they could be doing better. This freaked me out a bit, not only based on the language barrier (only one of them speaks English and has to translate everything), but training has become rather aversive to me over the years. I have spent countless hours in front of direct care staff who seemingly don’t care at all about learning, have no interest in what is being said, and are happy just “earning” a paycheck without doing anything that might elicit problem behaviors. I usually walk out of those trainings feeling frustrated and defeated, knowing what I said went in one ear and out the other (if it went in at all). Training the ABA Centrum staff was different. They were attentive and engaged; they participated, took notes (What?!), asked questions, kept their cell phones put away (not one phone was checked the entire time!), and seemed genuinely interested in hearing what we were saying. Remember – only one of them speaks English and had to translate everything we said. I walked out of the training feeling accomplished, and as though they took what we said to heart and will put it into action, which has become a foreign feeling to me. Later that day I posted a photo of the training on Facebook. A former co-worker commented, “It’s amazing when people actually care.” She’s right. Passion makes the difference. Passion drives you to work your hardest, push further, learn, grow, and keep going when it seems like odds are against you. They are facing many obstacles here and, I think, will overcome many of them. At the end of the day, it’s not about funding or profits, it’s about making a difference – and these four amazing women are doing just that. They have heart, they have drive, and they have passion. Because of them, I feel inspired for the first time in a long time. I’m learning more from them than they could ever learn from me.